Thursday, June 17, 2010

Update: Sorry for using a happy title and then writing a depressing entry. I put the title and picture in 1st with the expectation of writing a blog on the picture but somehow I got sidetracked. I guess this needed to come out more than I realized. Thanks for all the kind words in your comments. They mean a lot to me.

Taylor graduated last Tuesday so that was her last day of school. By this past Monday, the summer boredoms had set in. She went from going to school everyday, to having to stay home. She doesn’t start her new program at Sunshine Industries until July.

Normally she would have gone to her sister’s house a couple of days this week but my grandson is really sick with some sort of virus. The last thing we need is for Taylor to get sick. We are hoping he’s better by tomorrow so she can go over Friday and spend the night.

As far as Taylor’s health is concerned, well there are some issues that are going on with her brain. We’ve noticed that for the past several months, Taylor’s behaviors have changed quite a bit. Because she has so many seizure a day, we know that brain tissue is dying and we think that whatever part controls memory might have died.

Normally, if Taylor asked you for something, if you told her to wait, she would…for a limited amount of time. Now when you tell her wait, she’ll ask again within 5 minutes. It’s like she forgot she just asked. Also, we’ve noticed a change in the way she “plays”.

Now, while Taylor has always had the attention span of a gnat, it’s even worse now. It’s like she’ll start something and then you see this look on her face like she forgot what she was doing. It’s hard to explain.

We just know that Taylor is losing more abilities much quicker. Sometimes I’ll watch her have so many seizures, one after the other and think, I need to call the neurologist. Then it hits me. Why bother? We have exhausted all medicines and medicine combinations. She takes 4 seizure meds right now. We’ve also exhausted all surgical options. Cutting her brain in half didn’t even stop the seizures.

I struggle with am I giving up too soon and do I want what could be her last weeks, months, years to be spent in the hospital. I know that when she goes, I’ll second guess my decisions, wondering if there was some treatment I missed. Deep down in my heart, I know I’m making the best decision I can for Taylor. Right now, she is happy (except for missing school) and for her, the quality of her life is good.

Unfortunately, those second-guessing thoughts come at night, when my brain just keeps replaying every medical decision I’ve made over and over…wondering if somewhere, I made the wrong choice.

I realize that we as parents of special needs kids do what we think is in the best interest of our child based on what information we have at the time and the deep love we have for our children. I keep telling myself that replaying Taylor’s life and worrying that I did something wrong is a waste of time. Sometimes, myself doesn’t listen.

What a heartbreaking post, Dawn! Not at all what I was expecting from your cherry post title. People will always second guess themselves - it's human nature. And people will always beat themselves up, thinking "shoulda, woulda, coulda," but that's not realistic. There are some things that we can't control no matter how hard we want to, or howh ard we try. As you said, Taylor's happy, enjoying life. She's got an amazing family who love her. This is how things should be.By the way, the photo really shows how much the two of them look alike!

dawn i have spoken to you many times over the years as well as IM's and your blogs. Right now I want to cry in empathy for what all of you are enduring right now. I know what each seizure could mean and it's scary to live in the unknown of when will this seizure bring an end to your beautiful daughters life. That must be so scary for all of you....

I know every one is telling you to stop second guessing yourself I am going to say the same thing because I've known you for around 6 years now.

I pray for a miracle in her life; I also know God's will whatever it is will prevail. Taylor is such a special young woman...and as you told me many years ago her smile and love is the closest feeling you could have to what God is like.

Your other friends have offered many words of wisdom, so please if you can take the intellectual part of I did the best I could and move it to your heart, with acceptance out of love you have done it all. You are an incredible Mom all around, please don't torture yourself anymore if you can help it.

I love you and you know how I feel about Taylor even though we've never seen each other face to face. <3

I think your doing the best you can and as a mom our best is never good enough for us. I think that you are trying to cope with a situation that you already know the outcome too and this is your release. I love you much and know that you are doing your everything for your girl!

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About Me

I am the mother of a daughter with Trisomy 9p & Lennox-Gastaut seizure disorder. There is a lot to deal with when you have a special needs child & I thought it would be a good idea to share my travels here.